Massachusetts face to face with Lyme disease patient protection bill

Thursday

Jul 10, 2014 at 5:00 AM

One of the most misunderstood and underdiagnosed diseases today is Lyme disease. Each year approximately 30,000 cases of Lyme disease are reported in the US. The federal Centers for Disease Control and Prevention (CDC) estimates that the actual number of people infected with the disease each year may be 10 times higher than that. The CDC estimates that probably about 300,000 infections occur each year in the US.

Lyme disease is a systemic infectious disease caused by the bacteria Borrelia burgdorferi. The bacteria is transmitted to humans by infected ticks. Not all ticks can transmit Lyme disease, only those infected with the bacteria. That is why it is important to send ticks to a tick identification lab after tick bites occur.

The bacteria causing Lyme disease can affect all body systems causing a variety of symptoms, including different types of skin rashes. (One of those rashes is the well known circular bull's-eye rash surrounding the area of the tick bite.) It can also cause flu-like symptoms, joint pains, stiff neck, fever, fatigue, or other symptoms in the early stages. If not treated early, the disease can progress to a later stage which may result in serious neurological and cardiac issues.

According to the Massachusetts Department of Public Health, 4,080 confirmed Lyme disease cases and 1,585 probable cases were reported in Massachusetts in 2013 (total 5,665), an increase of 12 percent from the number of confirmed and probable cases reported in 2012 (total 5,050). The highest incidence rates were among children between the ages of 5- and 9-years-old and adults between the ages of 65- and 74-years-old. The onset for the majority of the cases was between June and August, however, Lyme Disease can also be contracted during other months.

LYME DISEASE PATIENT PROTECTION BILL

Lyme disease awareness advocates are hopeful that H.4142 (now referred to as H.4259) An Act relative to Lyme Disease treatment coverage will soon become law in Massachusetts. The bill, which earlier this week was referred to the committee on House Ways and Means, would require insurance companies to cover treatment of chronic Lyme disease. Lyme advocates are hopeful that the House will vote on it before the end of July.

“It’s come a long way and we remain hopeful,” says Sturbridge resident Trish McCleary. “This bill is sponsored by Representative Theodore Speliotis. If not passed this session, we will have to start all over.”

Above: Trish McClearly. Photo by Steven King

McCleary says the law is needed because some insurance companies have refused to cover treatment for people with chronic Lyme disease. McCleary is a co-founder of S.L.A.M. (Sturbridge Lyme Awareness of Massachusetts) and has been instrumental in helping to push the bill forward because of her own experience with Lyme disease and delay in receiving treatment.

McCleary was diagnosed with Lyme disease in 2006 after suffering paralysis, facial droop and inability to speak. She says that multiple medical providers told her that her problems were “all in her head.” She finally made an appointment with a therapist, even though she says she knew her symptoms were not psychologically induced.

“The therapist took one look at me and was shocked," says McCleary. "[The therapist] said it was the worst case of Lyme she had seen yet and picked up the phone to make me an appointment with a Lyme specialist."

According to McCleary, the Lyme specialist clinically diagnosed her symptoms, "as he was supposed to do," and told her that he thought he could help but "it would be a long road back to life." She says the Lyme specialist worked with a neurologist who also specialized in Lyme disease and tick-borne infections.

“My Lyme disease was clinically diagnosed, based on my symptoms, and oral antibiotics started immediately, followed by blood tests and a SPECT (single-photon emission computerized tomography) scan of my brain showing lesions," says McCleary. "I was thankful after years of pain and four and a half months not being able to walk on my own or put a sentence together, someone actually knew what was wrong with me."

McCleary says she was initially treated with oral medications but was later switched to IV medications, which she learned to infuse at home. She says that she was bedridden for two and a half years even though the treatment helped. She says her treatment was interrupted a number of times because her insurance company refused to pay for it.

ALL SYMPTOMS CRITICAL IN MAKING DIAGNOSIS

New York physician Dr. Daniel Cameron MD MPH is a primary care physician and epidemiologist who has treated Lyme disease patients for close to 30 years. Cameron says that he relies more on a patient’s symptoms to diagnose Lyme disease than on diagnostic tests because, he says, the tests are not always accurate. For that reason, he will treat a patient for Lyme disease, even in the absence of a positive blood test, if a patient exhibits certain symptoms. He says he looks for the presence of those symptoms when making the decision to treat a patient with antibiotics. Then, he attempts to confirm the diagnosis with blood tests but does not rely solely on the blood test results.

"Two of the most common tests used are the Elias (Lyme titer) Test and the Western Blot," says Cameron.

Above: Doctor Daniel Cameron. Photo submitted

Cameron explains that some physicians miss the diagnosis of Lyme disease because they don't look at all of a patient's symptoms combined. Instead, he says, they focus on individual symptoms, such as arthritis or fatigue, and treat those. He says that when a patient reports symptoms such as a rash, fever, joint pains and fatigue, those serve as a red flag warning that the individual should be examined for Lyme disease.

"It's a multi-symptom disease," he says.

According to Cameron, some insurance companies refuse to pay for treatment of Lyme disease in the absence of a positive test. However, he stresses that “the blood tests are only 20-30 percent accurate.” He says that insurance companies may also refuse to pay for treatment of chronic Lyme disease because some physicians dispute the fact that chronic Lyme disease exists. However, Cameron says more than one research study has confirmed that some people with Lyme disease were still experiencing symptoms years later.

The Infectious Diseases Society of America (IDSA) suggests the symptoms may be caused by other medical issues. They discourage the use of long-term antibiotic therapy because of possible complications. Others believe the decision to treat longer with antibiotics, if symptoms are still present, should be left up to the treating physician’s discretion. Some states have passed laws protecting physicians who decide to continue treatment for a longer period of time.

Cameron says he only uses IV antibiotics in a very small percentage of Lyme disease cases because oral antibiotics are usually effective. He says that he has used IV Rocephin, when indicated, because it’s able to cross the blood brain barrier. Cameron says he’s treated a number of chronic Lyme disease patients successfully.

Utilizing a holistic approach when treating Lyme patients, Cameron says he not only treats physical symptoms but also offers counseling and support. He explains that by the time some patients come to him, they are very discouraged because they’ve waited so long to get diagnosed and/or because of the toll the disease may take on them. He says in the case of children, they may be behind their peers in school and other critical areas of their life. He adds that it is very important to follow up when treating any patient with Lyme disease (early or late) to determine if their treatment has been effective.

Cameron encourages patients to eat a diet low in sugar and to avoid alcohol because, he says, “often, the symptoms are related to the immune system trying to fight the infection. Simple sugars and alcohol typically exaggerate the immune system response to the infection.”

Executive Vice Chancellor of Mass Biologics and professor at UMass Medical School in Boston Dr. Mark Klempner MD agrees that a patient’s symptoms must be considered when attempting to diagnose Lyme disease. “Early Lyme disease is a clinical diagnosis which means that there is no laboratory test that can absolutely confirm or exclude the diagnosis at the earliest stage of Lyme disease,” he says. “The patient’s symptoms, visible signs, history of potential exposure to ticks infected with Lyme disease bacteria, time since exposure to infected ticks and geography where they might have been exposed all need to be taken into consideration.”

Klempner says that “in about 90 percent of cases patients with early Lyme disease have a complete response to a single course of antibiotic treatment.” However, he says, in patients who are not treated, “there is a risk of developing later stages of Lyme disease, including meningitis, facial nerve palsy, a slow heart rate called heart block, arthritis especially of the knees, nerve pain and trouble with memory and concentration.”

While most people recover from Lyme disease with proper and timely treatment, at least seven people are reported to have died from complications. “The CDC has identified seven published case reports (including three reported in 2013) of deaths related to infection from the Lyme disease bacteria (or its very close relative that causes Lyme disease in Europe),” Klempner says. “In each case death has resulted from severe infection of the heart, a condition known as ‘Lyme carditis.’ Lyme carditis occurs in 1 percent or less of cases of Lyme disease and most of those individuals recover completely.”

Worcester resident Michele Miller's mother was diagnosed with Lou Gehrig’s disease in 2011. Miller says her mother experienced numbness in her hands and feet, as well as slurred speech prior to the diagnosis. A physician ordered an MRI to rule out a stroke and when the MRI showed no signs of a stroke, her mother was diagnosed with Lou Gehrig’s disease.

According to Miller, her mother decided to visit a local health food store to get some vitamins. She says when her mother mentioned to the store owner that she had just been diagnosed with Lou Gehrig’s disease, the owner suggested she get a second opinion and gave her the name of a physician. Miller says that physician was Lyme-literate and performed blood tests. One of those was a Western Blot Test, which she says confirmed that her mother had Lyme disease. She says her mother was also diagnosed with Babesiosis (another tick-borne disease with symptoms similar to Lyme disease as well as night sweats).

“My Mom was diagnosed with ALS (Lou Gehrig's disease) originally but there is no definitive test for ALS,” says Miller. “It is based on symptoms one would have. Blood work showed that my mom had a co-infection with Babieosis but by the time she got the proper diagnosis and treatment it was late-stage… she died in February 2013.”

Miller says her mother kept a journal describing her symptoms. Along with the symptoms, her mother experienced heart issues and arthritis. Miller questions whether those symptoms might also have been from Lyme disease but she says that no connection was ever made between all of her symptoms.

“My advice to other families is to get a second opinion and see a Lyme-literate doctor before it is too late,” says Miller. “Ask for the Western Blot (test) and contact our foundation for support.”

Miller and her husband Ken have formed the Central Mass Lyme Foundation, which meets monthly at the Worcester Public Library on Saturdays, from 1-3 p.m.

“Our goal is to be the resource for anyone who has been afflicted with Lyme disease or any other tick-borne disease, as there are many strains that unfortunately are yet to be diagnosed,” says Miller.

LYME DISEASE REPORTED THROUGHOUT MASSACHUSETTS

Kevin Moran, a board-certified entomologist and technical representative who works throughout the state for Residex, confirmed that other tick-borne diseases, including Babieosis and Anaplasmosis have been identified in Massachusetts. He says “lone star” ticks have been implicated in some cases but says the primary carrier of Lyme disease is the black-legged deer tick.

“The spread of Lyme has followed the spread of the black-legged tick Ixodes scapularis, commonly referred to as the deer tick since the adult stage feeds on and is carried to new locations by the white-tailed deer,” says Moran. “The nymphal (growing) stage feeds on ground-dwelling birds, chipmunks and most commonly the white-footed mouse. This nymphal stage, the size of a poppy seed, is probably the principal problem with disease spread since it is so small, even after feeding, that it is not discovered, thereby spreading the disease with its feeding and then falling off to mature."

Moran says that the explosion of the white-tailed deer population has contributed to the increased number of Lyme disease cases.

“We know that the population of white-tailed deer is exploding in our urban/suburban interface,” says Moran. “Plenty of small open spaces for the deer with limited hunting and no predators. Wherever we find high deer populations and infected mice – you will have Lyme. The epicenter in Massachusetts is the Cape and island areas but the disease and infected ticks are now found in all counties and areas of the state. All New England states, along with New York, New Jersey and Delaware are dealing with exponential growth of this problem. There are also high incidences of Lyme (and related tick-borne disease) in areas of Michigan and Wisconsin.”

Moran says that while many lawn care and pest management companies, including Residex, offer tick control services, the best way to prevent tick bites is through knowledge and constant tick checks. Because Lyme disease is so rampant, he also advises, “The use of repellents and the use of treated clothing, if walking or working outdoors in high grass or brush, are now required.”

Lyme disease is serious. It must be detected and treated early to avoid more serious health issues. Experts advise that all of a patient's symptoms must be considered when attempting to make a diagnosis. It is important to remember, as well, that Lyme disease can affect people of all ages.

“Researchers have reported that women who are bitten by an infected tick during pregnancy can transmit Lyme disease to their baby,” says Cameron.

McCleary, along with other members of the Central Mass. community, is hopeful a decision by the House this month will support the rising number of individuals affected by Lyme disease.